They extubated around 11:10, after Hana opened her eyes. They had her on high flow nasal cannula and then switched to the mask. They started to hear a stridor and wheezing. They kept checking and checking. The doctor did not leave the room. They tried some steroids and other respiratory therapies. They gave her precedex. They tried suctioning through her nose. After that her O2 dipped down in the 50s. 

For a little while it looked okay. I felt lightheaded so I got a drink. Then it just got worse. Hana was working harder and harder to breathe. Her heart rate was creeping up. Then it got nerve wracking. People start hurrying around and calls were made. Then you see Hana really struggling to breath and I started to cry a little. 

The respiratory therapist had the bag going and things were holding steady for reintubation. I was so upset and scared that I left the room when there was no more room for me at the bedside. I cried in a little room just outside the pod (the room Hana is in with six other patients). A respiratory therapist brought me tissues and water. I kept poking my head in to read the monitor with her heart rate, blood pressure, respiration rate and O2. But I was also reading the look on the faces of the people surrounding Hana’s bed – they looked calm. The senior CVICU Doctor did the reintubation. She is amazing. She was the one who admitted Hana and she has the touch like a gentle mother.

So, it was a step back. Pretty much what happened was that Hana’s airway started to swell when the breathing tube was removed. It was very scary. This is what happened the very first time they removed her breathing tube back in February. I ask myself how much of this can we handle? I have thoughts of Hana dying and then I immediately feel guilty and terrible. I felt that when I stay by myself near the room, but not in the room, I could think more positively and visualize positive outcomes.

Hana is getting steroids for the swelling. They will evaluate and maybe try extubation again on Thursday.


Transfusion Then Extubation

Hana was very restless over night. They gave morphine and versed drips and ketamine. She is still thrashing about this morning. We woke up and hurried this morning because they were going to start the extubation at 7:40. Hana’s blood count was low this morning, they are not too worried as they think it may be from so many blood draws. They decided to do a blood transfusion before extubation, to boost her hemoglobin. They have to follow special protocols because Hana is a possible transplant candidate. We are waiting for the blood to come up – I guess it takes a while to scan. Then half the transfusion will take place over an hour and the other half over three hours.

I think it will be early afternoon before extubation. We have the same day nurse as yesterday. She has many good qualities I just wish she were more attentive to some details. It has been a full time job holding Hana still! 


No Extubation

They turned off Hana’s morphine drip and her propofol around 2:40, in preparation for her extubation. They wanted her to be awake, eyes open, breathing on her own and not still in a deep sleep when they took the breathing tube out. Well, she started breathing on her own. She started squirming around a lot. She just didn’t really open her eyes very much.

We waited. By her bedside was the Nurse Practitioner, the nurse and the respiratory therapist. An hour went by – the NP started doing her notes nearby, the nurse went on break, the RT went to attend to another patient. Another hour went by. The attending physician wanted to wait until morning to extubate so that everyone who might possibly be needed were nearby. So Hana did not get her breathing tube out!

The next attending physician that was on explained that some kids just take that long for the morphine to wear off and we should not worry. They started her back on the morphine drip right around 6:30 at which time Hana started to open her eyes and look at us. They decided to give her versed as needed to help with her thrashing about. I was peeved with the nurse who seemed not attentive to Hana’s thrashing around. Her art line started to bleed. She knocked one of the caps off her drip into her PICC line and dripped a while onto her bed before my mom noticed. She almost pulled her NG tube out. She was knocking the breathing tube all over the place. I felt kind of stressed trying to keep her still and I was uncomfortable because I don’t know how careful I need to be with what and there are so many tubes and lines it gets crazy.

I’m kind of exhausted today! But hopefully the breathing tube will come out tomorrow with no problem! They are stopping the morphine and versed at 6:30 am and they didn’t start up her feeds tonight so she will be ready for extubation in the morning and we will have all day to see it happen.

Below Hana was holding onto the suction thing they put in her mouth to suction out the spit (just like the dentists office) but she wouldn’t open her eyes!  

Extubating Today

After rounds today they decided that they will extubate her, take the breathing tube out, today. This was confusing to me at first because her lung is looking worse. They said that her heart function is handling everything fine so they just need to give her time, like any kid would need time, to recover from an illness. She was well compensated before she got here so they believe that she can get well on her own and her heart will handle it fine. They also said all the things they have done can actually make it worse – the PICC line, arterial line, the breathing tube, the sedation is all not helping her.

I still have some more questions about how this unfolded.

Hana is a real fighter so this may be a better course of action for her just getting better on her own.

The lingering question that will need to be answered is the one that is always in the background – does this mean it is time to list her for transplant? If this is what happens every time she gets rhinovirus then I think maybe it could be time. The heart failure/transplant team said they need to get together and have a serious discussion amongst themselves soon.

So, the x-ray looks a little worse but listening through stethoscope she sounds better. They said the x-ray can “lag” behind what is actually going on. They stopped her feeds so that her stomach is empty and they can do the extubation today around 3pm. I was talking with the night nurse last night and she was telling me that often when they put in a PICC line or a breathing tube that there are only two people at bedside. With Hana there are usually about ten. This makes me nervous and just reminds me how delicate and careful they need to be with every move they make.

Let’s visualize a successful extubation today and clear lungs soon!


Some Lost Ground

Hana’s X-ray last night looked the same and the one this morning looked worse. I don’t know how much worse, I haven’t seen it and no one has qualified it other than to say “we lost some ground”. The worry over the night was Hana’s blood pressure which was a little too “soft” or low from what I could tell. She also hadn’t peed in quite a while. The did an ultrasound of her bladder around 2 a.m and then catheterized her which yielded some urine. I guess morphine causes you to retain urine.

This morning her blood pressure looks better around 70/40. They are considering other options beyond the APRV (airway pressure release ventilation). One of those options includes taking the breathing tube out to see how Hana does on her own in inflating her lung – this is still the best way to inflate a lung. She has been taking more breaths on her own. Until they decide on rounds today about her lung they are flipping her prone for 18 hours and supine for six hours. They may also do a CT scan to make sure they aren’t missing something else that may be going on.

I really want to hold my sweet girl! I guess she was wiggling a lot early this morning (it took the nurses an hour to get her calm during their shift change, so I wasn’t there) and I’m worried that her hearing my voice makes her squirm even more so I’m trying to be quieter and touch gently. It sucks having these gloves on. My mom is here now, so that helps.

Let’s visualize some progress today!


Lung Is Looking Better

The last X-ray started to show improvement in Hana’s left lung, in the upper lobe! You can also hear some breathing on the left side. When I listened again this evening I could hear even more breath sounds than this afternoon. They also decided to move her prone to help her lung open even more. It did take a lot of medication tinkering to get her sedation right. She was still squirming a lot and they barely got a good picture for the last X-ray. They started her on propofol to keep her calm which they typically use in the OR. They’ve taken her off versed and decreased morphine.

The only snag today was doing another arterial line. I went in when they said she would be done and the attending Doctor was in there gowned up with a hair net thing on. I asked him if I should be worried that he was there and he said no and then something about an artery spasm. In the end, they got the art line in and all seems to be well.

While Hana was on her stomach and sedated I worked on getting her matted hair untangled. She has wild hair on a normal day! I’m a little worried about Hana’s blood pressure because it is kind of low – around 60/35. Her other vitals are fine. Blood gasses are showing CO2 a little high but as long as her blood pH doesn’t get too low they are ok with it short term. Her potassium has also been low so they have been giving her that too.

They’ve talked about extubating her as early as tomorrow! Hopefully that will go smoothly too.

(They just reduced her propofol and talked about maybe increasing milrinone slightly, blood pressure was even lower.)

They are doing another chest X-ray around 10:30 tonight.


X-Ray Looks Unchanged

The last X-ray of Hana’s lung looks pretty much the same. This was very disappointing for us. The good thing is they are starting to hear some breathing in the left side. Today they are going to try something different with the ventilator to help open her lung. They will push more air in her lung to try to inflate it and then hold it there for 3 seconds. Then they will let it deflate just a small amount for a split second (0.45). They have to check her blood gases carefully to make sure there is enough oxygen/carbon dioxide exchange. Her CO2 has been a bit high. They will do another chest X-ray this afternoon.

Hana has been wiggling around a lot so they’ve been adjusting her meds. They have been giving her a bit more Ativan to help keep her still and calm, they don’t want her disrupting the placement of her breathing tube. She is also getting a morphine drip. They’ve talked about putting her back on Precedex. They want to back off her milrinone as soon as possible but not quite yet. Other than that her meds are unchanged.

Hana is back to getting continuous feeds or straight breast milk – to her usual daily volume. The arterial line they put in yesterday stopped working, which is a bummer, but they will put in another one today.

On another note the attending doctor in the CVICU said there have been studies showing a correlation between UTIs and respiratory infections, but they don’t understand why. So maybe the UTI made Hana more susceptible to rhinovirus.

Through all of this Hana has done extremely well, so that is definitely a positive!
Let’s hope for more progress today!

Below are two pictures, one from yesterday and one from February. Look how much Hana has grown! We also have so much to be thankful for – things were a lot worse 11 months ago.